Sunday, May 06, 2007

Where DO We Find Multiple Sclerosis Information?..

I just got off the phone with a friend of a coworkers acquaintance (that Six Degrees of Separation theory MUST be real!) who was recently diagnosed with Progressive MS...He happens also to be seeing Dr. She Who Will Not Be Named (and the world closes in smaller and smaller).

I realize this post may be beginning to sound like one of those bizarre "we're all connected" commercials, but the cold and painful reality is: We're not. And maybe we should be...at least more so now than ever with the advent of the Internet.


Anyway, this poor guy is newly diagnosed and searching...searching for answers, searching for facts, searching for hope, and probably still newly diagnosed ENOUGH that he is searching for a "cure". We've all been there, done that.


I ended up putting together an email for him with just a small fraction of the various websites I have found useful over the years...and I thought to myself, "Hey self? (see Harkoo...you're not the only one who talks/thinks to themselves! LOL)...Why not post this email (with a few edited deletes for privacy sake) just in case there is someone lurking here on BRAINCHEESE (and I KNOW there are those of you who lurk and don't leave comments...but if it's serving a purpose for you, then I can die in my sleep as a contented person) who might ALSO be needing or interested in this information?" Yep, it sounded like a good idea amongst the chatter in my head! LOL


So, here it is...comments and websites:


Well, as promised, let me overwhelm you with links about Multiple Sclerosis!

This one is the link to the LOCAL Greater Washington MS Chapter: www.nationalmssociety.org/was

The National MS Society link is simply:
http://www.nationalmssociety.org/

The MS Association of King County web site is:
www.msakc.org/

The "Brits" also have a pretty good site called "The Multiple Sclerosis Resource Centre". There is information here about Novantrone also:
www.msrc.co.uk/

The Consortium of Multiple Sclerosis Center is a more clinically based site, but has some good information (if you can medically grasp it!...I even have some trouble):
www.mscare.org/cmsc You can become part of a biannual research project at this site (NARCOMS), which I participate in. The nice thing is, if you agree to fill out their surveys, they send you a quarterly magazine with all the latest research and clinical trials being offered. If interested, just click on the NARCOMS link on the left side of the page, and you'll be taken to a patient registry site.

www.neuropat.dote.hu/myelin.htm is a VERY clinically based neurology web site about demyelinating diseases, but has a section on MS and lots of clinical journal entries/links (again, a site for the medically brave).

Friends With MS is more of a "meet others with MS" web site...they have a chat room also:
www.friendswithms.com/

One of my personal all-time favorite MS sites is written by this physicist (I think, or some kind of engineer) in Texas...I even have his bumper sticker in my car window! It's called Multiple Sclerosis Sucks and the link is
http://www.multiplesclerosissucks.com/ His site is really worth the read, but not for the too serious in nature!

"This Is MS" is a great site run and built by people with MS...lot's of information and message boards that are useful:
This Is MS Unbiased Multiple Sclerosis Research, News, and Community

And it is sometimes important to have that MS T-shirt or design that says it all about how you feel, so here are three sites for such items...the Zazzle site is actually mine with mugs I have created!
Multiple Sclerosis T-Shirts and Gifts : CafePress.com : Shop Over 35 Million Unique Products and

Hats and Bags : Multiple Sclerosis Awareness Shop : CafePress.com and

Baitulos - Zazzle Contributor Gallery

And finally...if you are not OVERWHELMED enough by now (!)...there are hundreds of folks out there with MS that write blogs. I am one of them. My blog site is called BRAINCHEESE, and it is at
http://www.brain-cheese.blogspot.com/ . I have several links of other MS blogs I read/and or follow to the left of the site...and each of these bloggers have even MORE links on their sites! One of my favorites as far as talking about MS directly and its symptoms is on Healthtalk: http://blog.healthtalk.com/multiple-sclerosis/life-with-ms/ .


So there is the "edited" version of the email. As I said, these are just the tip of a very large iceberg of web information available...but you kind of have to know where and how to begin a search to get connected with some of these sites.


I am considering posting a blog and/or doing a video for folks newly diagnosed (I know the NMSS has the corner on this "market", but I'm not sure they are doing them justice with all of their "political" restrictions) and I would like some of you old timer MSers to offer some feedback (if you can remember, that is!). I'd like to know what things were important for YOU to find out, research, topics, know when you were first diagnosed and what your questions were/are. I think this could be done with humor, yet informative and make the whole process a bit easier for these newly diagnosed, shakin' in their boots, souls.


Let me know what you think...this IS, after all, an interactive blog!...

19 comments:

harkoo said...

For me the best thing was to go to the local MS Support Group to meet the other people dealing with MS--they became the best friends i ever had--it was the face-to-face contact and support that helped--the websights and books came later. But you are certainly capable of creating your own sight or writing a book for the newly diagnosed with your medical knowledge and personal insight--and your humor would make it a delightful way to take the edge of their anxiety. You did a good thing today for this person.

BRAINCHEESE said...

HARKOO/JOYCE:

Thanks for the feedback...I'm going to compile a list of "notes" to work from, so yours will definitely be added.

Oh, and thanks for the words of encouragement...but for THAT, I could commit you! LOL

LD

Steve said...

Things have come a long way over the last 30 years. My mother in law was told when diagnosed (around 1980, I think) that her life was effectively over. She was prompted by her doctor to quit her job, turn in her driver's license and apply for disability. She was also encouraged to resign herself to enjoying a sedentary life of reading and television. Unfortunately, she took this advice to heart and it infuriates me to no end if I think about it for too long.

I think that your idea for a video is a fantastic one, and I can't help but think about how much different my mom-in-law's life would be now if she had seen one 30 years ago.

BRAINCHEESE said...

STEVE:

Thanks for the encouragement (I think?!? LOL) I'm sorry your MIL had to go through what she did...unfortunately, at that time, MS WAS thought to be fatal and there WERE no drugs to help slow the progression.

On a side note: OK, I admit I DID look at your My Space site...I'm nosey! And I also saw where you do video production/some kind of education for a living...way cool! And while I'm into "admiting" my surfing...I also went to your Coach's website. I now have a tiny understanding how Josh was "winning"...even though he was "on the bottom", shall we say! Dear God! You really have to be flexible to do that BJJ!!! Human pretzels from what I could tell...

LD

Steve said...

LOL. It was intended to be encouraging to you! I wish my mom-in-law had someone like you around to tell her that her doctor was full of BS.

Not that you need to know, but she's battling a recurrence of breast cancer, as well as diabetes now and it doesn't look good. The cancer is in her lungs and so far it's not responding to chemo. We're hopeful for her, but are trying now to do what we can to make sure that her life is as full as it can be, so that if we have her for 6 months or 6 years we'll know we made her as happy as we could.

Regarding your surfing, I'm flattered! I can tell you that honestly that it's taken 15 years off of me, and James is a great human being. Brazilian Jiu-Jitsu is fascinating to me. It's like a cross between chess and wrestling, cerebral and physical. I leave class tired both mentally and physically and love it. If you're interested in reading more about it, or watching some matches between really good practitioners, I'll send you some links.

BJJ is also, in my opinion, THE best self defense for women. Reality is that if a woman is being sexually assaulted, they will wind up on the bottom, under a man who is stronger and heavier. BJJ teaches you to fight from your back and while strength and size help, it's as much mental as it is physical. There are a couple of woman who train with us and they routinely kick my ass.

That's the condensed version of my sales pitch! :D

Suzy said...

Well, for me, I'm still in denial. OH wait....is that some river?

I'm just a lost soul...trying to find out where I belong on this ever loving journey of health issues. Always sumthin', isn't it?

Ahh...so there's my rant for the evening. Rants...is that all that I have in me lately? Grrrr....

Hope all is well in your world!

BRAINCHEESE said...

STEVE:

WOW! The MIL has sure taken a hit...and your family as well, no doubt. I wish and hope the very best for ALL of you during this ordeal.

LD

BRAINCHEESE said...

SUZY:

Oh, you big ol' Teddy Bear, you! Denial De-Shmile...You certainly have THREE very good reasons to swim in that river (no, I'm not talking about Sissy, Lil' Luv, and Luving Hubby!) with your unheard of and rare "disorders". But I really don't think that's the river you are in! LOL Sometimes, I imagine it feels like a river of deep, flowing "sheet", though...

LD

Funky Mango said...

Best online MS community I've come across by far is Jooly's Joint. It's run from the UK but the users are from all round the world. There's a chatroom, forums, mailing lists...I had a great night 18 months ago at the site's 10th birthday party - over 200 people from all over, including the USA, Canada and even Australia!

Have myelin? said...

great idea! tell you what *my* frustration is with online videos. youtube.com (what does that name mean anyway, i have visions of my intestines inverting..) has many videos on MS but me, being as lucky as I am cannot really lipread these people who don't ya know, STARE AT THE CAM AND SPEAK CLEARLY for deafies like me. After all, there aren't many of us out there. Or are there? I know several deaf MS'ers. Go figure.

I'm still falling down the rabbit's hole so the best suggestion I have is to read, read and read! And stay away from advice like "take 4 of these green seaweed pills four times a day" and they'll cure your MS.

Oh plez... Heck I'd pile on the kelp if it helped. It won't. It even kills your garden!

Miss Chris said...

I think the most important thing for the newly diagnosed is communication with those of us who know what they're going through. That is what helped me the most. There are many sites that offer information but I feel you get the best information from people like us. Does that sound pompous? I don't mean it to.

BRAINCHEESE said...

FUNKY M:

Yes, I agree. JJ's is a great jumping off chat space and I used to go there. Unfortunately, a couple of years ago, there was a "tiff" (as often occurs in chat rooms) and several of us left and started a private chat room. I haven't been in JJ's for many months, but may go back and check it out.

Thanks for the tip...

LD

BRAINCHEESE said...

HAVE MYELIN:

Sure that's just not old age?!? LOL

No, I too, sometimes have difficulty with the sound on YouTube...especially when it DOESN'T match up with the lips!

LD

BRAINCHEESE said...

MISS CHRIS:

One of the most helpful places I went to initially was Jooly's Joint Chat Space (see FUNKY'S comment) because the peeps there had/have varying years of diagnostic experience...I could ask questions and someone could usually answer.

The information available on most MS websites is usually so CENSORED and in support of the DRUG COMPANIES, I didn't find much useful information there. MSer's tell the REAL story!

LD

harkoo said...

Have spent the morning reading "MS Sucks" with great interest and enjoyment--Thanks for the imformation--you seem to be similar spirits (that is a good thing!)

BRAINCHEESE said...

HARKOO/JOYCE:

That guy at MS SUCKS.COM is smart and funny! I'm just, well..."funny", in a peculiar sort of way...kind of "ha ha" funny mixed with "circus-freak crazy" funny...LOL

Glad you're enjoying his site...

LD

adina said...

a fair , safe and definitely less talked about approach to MS is on http://www.swankmsdiet.org/
. Some people swear by it (there’s a message board buried in there somewhere) . I look at it as nice way to loose weight while trying to make the MS easier on your body , nothing to loose,

BRAINCHEESE said...

ADINA:

Yes, I've heard of the Swank Diet and actually know a few MSers on it...but it has that word "diet" in it, which is like acid to my soul! LOL

LD

Have myelin? said...

HELP! I'm being bomboarded! Every single day I get something to read from "Shared Solutions" in the mail and it is something I've ALREADY gotten!

Except the travel pack! And I specifically asked for one since I'm going to Texas Monday.

Can't wait to get on the Texas BBQ grill and wither away. LOL.